1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 5, 2017.

  1. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    871
    Likes Received:
    6,873
    Location:
    UK
    I finally gritted my teeth and waded through the whole of the 39 page document at the head of this thread.

    My summary: Take a group of long term ME sufferers who are well enough to attend group sessions lasting several hours. Vet them carefully to weed out the scientifically inclined and to include the lonely, desperate and suggestible. Provide them with a group facilitator and a role model of someone who has 'recovered'.

    Get them to talk about their experiences guide them towards focusing on being on a 'path to recovery', with focus on listening to their bodies in some sort of semi mystical mumbo-jumbo way, and to redefine what 'recovery' means for them.

    Work on building a supportive positive group dynamic, a mix of encounter group, religious cult 'love bombing' techniques and psychobabble.

    Encourage them to put a positive spin on everything as part of their recovery journey. Build up as heroes and role models anyone who makes any claims of recovery. Do it all in a highly charged atmosphere where people get a buzz out of being creative with their recovery stories. Where being negative or sceptical is not an option.

    Write up the 'research' with a weird mix of self indulgent 'poetry' and waffle dressed up as storytelling mixed up with long words like heuristic and bits of psychobabble.

    I feel sick.

    Edit to add: And this foolish person is currently working on a PhD on this junk.
     
    inox, Barry, Viola and 23 others like this.
  2. large donner

    large donner Established Member (Voting Rights)

    Messages:
    83
    Likes Received:
    628
    Shall we have a whip round to buy him a nightie?
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    163
    Likes Received:
    936
    Location:
    UK East Midlands
    Well if this is being inflicted on severe patients this is up there in the evil bar steward rankings. IMO
     
    ukxmrv, Sbag, Trish and 3 others like this.
  4. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    433
    Likes Received:
    1,377
    Thanks, @Trish, for your effort! That's very informative.
     
    Viola, MEMarge, Trish and 2 others like this.
  5. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    112
    Likes Received:
    738
    Location:
    Liverpool, UK
    Not to mention the money spending rankings :banghead: and rubbish PhD rankings :speechless: so idiots like this can call themselves "Doctor". :eek: Socktor more like! ;)
     
    NelliePledge, Inara and Wonko like this.
  6. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    433
    Likes Received:
    1,377
    Honestly, it would be just wonderful: positive thoughts and - ca-ching! Then I'm rich, healthy, beautiful and...whatever...

    ..although I would be very happy about the health alone...

    And honestly, I tried these things in the past. I was a short time into "positive thinking". I also tried self-hypnosis. It wasn't expensive, so why not give it a try? It just didn't work. And I'm most certainly sure I didn't fail since I didn't believe or thought positively enough.

    I also know religious, esoteric and guru-like groups. It's not for me. In some cases it's even dangerous, so I'm always a bit suspicious. This RyB group makes me suspicious and uncomfortable. I mistrust NLP although many people swear by it.

    For me it's unbelievable something like this is publicly funded (via taxes). ME science really could need any cent for real research.
     
    Viola, NelliePledge, EzzieD and 3 others like this.
  7. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    871
    Likes Received:
    6,873
    Location:
    UK
    ''I found a way of researching both for the present and the future that fits the purpose of my on-going enquiry and that reflects my personal way of being. It’s a process that draws from and builds on the creativity in which I engage; in my everyday life, as an occupational therapist, and as a Social Sculpture practitioner.''

    This is how the author describes herself.

    Social Sculpture practitioner, anyone? No, me neither.
     
    Valentijn, fossil, Solstice and 8 others like this.
  8. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    697
    Likes Received:
    4,654
    Location:
    UK
    Wasn't that the trade of the guy who made the mounds of people parts in hellraiser?
     
    Valentijn, EzzieD, Inara and 3 others like this.
  9. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    112
    Likes Received:
    738
    Location:
    Liverpool, UK
    It's all Me Me Me isn't it? (please can I request a Barf emoji?) Just like the rest of the Psycho lot.

    [​IMG]
     
  10. Scarecrow

    Scarecrow Senior Member (Voting Rights)

    Messages:
    329
    Likes Received:
    1,499
    Location:
    Scotland
    @ladycatlover Allow me. :sick::sick::sick:

    It lacks a certain graphic quality but the sentiment is there.
     
    Viola, Joh, ladycatlover and 2 others like this.
  11. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    871
    Likes Received:
    6,873
    Location:
    UK
    That's one thing that really struck me too. I got the feeling from reading the document that she was having a terrific time being wonderful and creative.

    My heart goes out to any severely ill ME sufferers who stray into their playground to have their heads messed with in their game of 'you can play with me so long as you pretend you're recovering'.

    What happens to the patients afterwards when the warm glow wears off and they realise they are just as sick as when they started, and the guilt comes crashing in as they think they failed because they didn't try hard enough.
     
    inox, Viola, Solstice and 11 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    247
    Likes Received:
    2,580
    I think Social Sculpture might be what Marcel Duchamp did and signed 'R Mutt'. Very creative Unknown.jpeg
     
    2kidswithME, MEMarge, Trish and 4 others like this.
  13. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    251
    Likes Received:
    1,946
    Location:
    New Zealand
    Slightly off-topic, but if you will allow me..
    My sister-in-law sent me an email a month ago saying she had just heard about the Lightning Process, and it sounded very exciting- and had I? I didn’t reply because I didn’t know how to without potentially causing upset...
    But I talked with her recently, and she had gone away and done some reading. She apologised for suggesting it to me and said she was appalled that this was being promoted.

    My jaw hit the floor! A very pleasant surprise - particularly given that she has been studying psychotherapy!

    So maybe there is hope that the message about these ‘therapies’ is finally changing..
     
    inox, Viola, 2kidswithME and 16 others like this.
  14. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    112
    Likes Received:
    738
    Location:
    Liverpool, UK
    That's fantabulous! :)

    Why not ask her what she thinks about the above paper on social sculpture? Psychotherapy isn't at all like "social sculpture" - she'd probably be horrified by it. But don't feel you have to of course. :)
     
    Trish and Wonko like this.
  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    163
    Likes Received:
    936
    Location:
    UK East Midlands
    B S practitioner
     
    Viola, MEMarge, Inara and 4 others like this.
  16. Sbag

    Sbag Established Member (Voting Rights)

    Messages:
    40
    Likes Received:
    186
    and that it is an NHS service makes it even worse. If it was a private clinic then it's evil but not as worrying. But being nhs takes it to the next level - Disney villain scale of evil
     
    Viola, NelliePledge, Trish and 2 others like this.
  17. ukxmrv

    ukxmrv Established Member (Voting Rights)

    Messages:
    31
    Likes Received:
    234
    This sounds like the study that AFME made the centre piece of their "Severe ME Symposium" day in 2014. I had an frank exchange of views with George Lewith that day. HE has since passed away. I was hoping that this has gone with him but obviously not.
     
    Viola, Inara, Trish and 1 other person like this.
  18. Sbag

    Sbag Established Member (Voting Rights)

    Messages:
    40
    Likes Received:
    186
    Found another poster
     

    Attached Files:

  19. soti

    soti New Member

    Messages:
    2
    Likes Received:
    10
    This is an entirely inappropriate comment. It insinuates that girlieness is shameful and insulting, and furthermore associates it with non-seriousness and bad methodology. Neither of these insinuations has any basis in reality.

    Many scientists are girlie. Yes, it's possible to be girlie AND to use controlled methodology to reduce risk of bias. And amazingly, girlie scientists are just as smart as non-girlie scientists. Perhaps if we had more such scientists, we would see fewer stereotypically feminine images being used inappropriately to shame bad methodology.

    Come on Jonathan, the methodology is shameful enough on its own. Argue on the merits, not "ad feminam". There's no place for that here.
     
    Greebo, Sly Saint, BruceInOz and 4 others like this.
  20. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    560
    Likes Received:
    3,589
    "Recovery isn’t a
    possibility – it’s a
    certainty.
    It just is…and I
    am…"

    How inspiring.

    "Due to its outstanding positive results..."

    Where?
     
    Viola, MEMarge, Inara and 4 others like this.

Share This Page